Assessment of Delayed Reporting of Mycosis Fungoides and Sézary Syndrome in the United States

Changing Incidence Trends of Cutaneous T-Cell Lymphoma

“…In the case of CTCL, however, for diagnoses made between 1975 and 1994, there was minimal if any reporting delay overall. 13 While we do not have specific evidence on delayed reporting since that time, this finding makes it unlikely that delayed reporting played a primary role in our findings.…”

Incidence and survival patterns of cutaneous T-cell lymphomas in the United States

“…[5] Dores et al reported a 6% increase in submissions for MF/SS from 1990 to 1994. [47] We compared the age-adjusted incidence rates for CTCL and its subtypes diagnosed from 2005-2008 one year after it was initially reported, and found a 2.9% increase in rates of MF, 14.3% increase in SS, 1.9% increase in CD30 + LPD and 1.8% increase in pcTCL; however J U S T A C C E P T E D no increase in SPTCL incidence rates. The 14.3% rate increase in SS likely is due to the small number of initial cases resulting in a large percentage increase, and this reflects the difficulties associated with reporting incidence on rare cancers.…”

“…The SEER registries minimize biases introduced by missing data by rigorous evaluation for data quality and completeness, resulting in case ascertainment ≥98% of cases across all SEER registries. [46] As discussed in previous SEER studies, [5,47] delayed reporting can have an impact on incidence on the most recent 1-3 years of incidence data, and is especially true for those cancers that are diagnosed as outpatient. [48] Recently, SEER introduced the Cancer Query Systems (CanQues) application that provides delay-adjusted incidence rates.…”